296 ©2008 Schattauer GmbH

Commentarieson“Informatics and Medicine: From Molecules to Populations”

R. B. Altman1,R.Balling2,J.F.Brinkley3,E.Coiera4,F.Consorti5,M.A.Dhansay6, A. Geissbuhler7,W.Hersh8,S.Y.Kwankam9,N.M.Lorenzi10,F.Martin-Sanchez11, G. I. Mihalas12,Y.Shahar13,K.Takabayashi14,G.Wiederhold1 1Stanford University,Stanford, CA,USA 2Helmholtz Centre for Infection Research, Braunschweig, Germany 3UniversityofWashington, Seattle, WA,USA 4UniversityofNew South Wales, Sydney, NSW,Australia 5University of Rome “Sapienza”, Rome,Italy 6South AfricanMedical Research Council, CapeTown,South Africa 7Geneva University andUniversity Hospitals, Geneva, Switzerland 8Oregon Health andScience University, Portland, OR,USA 9World Health Organization, Geneva, Switzerlandand University of Yaounde I, Cameroon 10Vanderbilt University,Nashville, TN, USA 11Institute of Health “Carlos III”, Madrid, Spain 12Victor Babes University of Medicineand Pharmacy, Timisoara, Romania 13BenGurion University, Beer Sheva, Israel 14Chiba-University, Chiba,Japan

Summary With these comments on the paper“In- “informatics spectrum” from bioinfor- Objective: To discuss interdisciplinary research and formatics andMedicine:From Moleculesto matics to publichealth informatics. What education in the context of informatics andmedicineby Populations”,written by Prof. Klaus Kuhn can be addedtotheir comprehensive and commenting on the paper of Kuhnetal. “Informatics andothers [1], Methods of Information in convincing analysis? Iwould like to stress andMedicine: From MoleculestoPopulations”. Medicine wants to stimulate an urgently one important emerging phenomenon: the Method: Invitinganinternational group of experts in needed broaddiscussion for further inter- empowered, independent, andthoroughly biomedical andhealthinformatics andrelated disciplinaryresearch andeducation of in- “networked”consumer. disciplines to comment on this paper. formaticsand medicine, andbeyond. An in- Modern youth have access to technology Resultsand Conclusions: Thecommentariesinclude a ternationalgroup of expertsinbiomedical that arguablymakes their intellectual, social wide range of reasoned arguments andoriginal posi- andhealth informaticsand relateddisci- and economicdevelopment radicallydiffer- tion statements which,while strongly endorsingthe plineshavebeen invitedbythe editor of entfrom not onlytheir parents, butfrom any educational needsidentified by Kuhnetal., alsopoint Methods to comment on this paper. Each of generation of humans that have yetlived. out fundamentalchallenges thatare very specific to the unusual combination of scientific, technological, per- the invited commentariesforms one section Yo ung adultshavegrown up in aworldwith sonal andsocial problems characterizingbiomedical of thispaper. routineaccess to information around the informatics.They pointtothe ultimateobjectives of globe via the internet(news sites, blogs, managingdifficulthuman healthproblems, which are wikis, chat rooms,social networking sites, unlikely to yield to technological solutionsalone. The and more).Theyhaveand expect rapid ac- psychological, societal,and environmentalcomponents 1. Informatics for the cess to volumesofinformation that could of healthand disease are emphasizedbyseveral of the “Networked”Generation hardlybeimagined 25 yearsago.They man- commentators, settingthe stage forfurther debate and agethis information with novelstrategies constructive suggestions. (by Russ B. Altman) thatemergebynecessity: some usefairly static trustedsources (in the formofblog Keywords Thepaper by Kuhn et al.[1] offers an excit- sites, wikipedia or even traditionalnews Medicalinformatics,biomedical informatics, ing andcomprehensive vision of howin- agencies) to aggregateinformation and healthinformatics,interdisciplinarity formatics can be aunifying force for inte- distill it to somethingmore consumable. Methods Inf Med2008; 47: 296–317 grativeresearch in biology andmedicine. Others have increased their communication Theymakeaconvincing case thatthe physi- bandwidththrough apparentlyconstant, un- cal spectrumfrom atoms andmolecules to interrupted useofe-mail, instant mes- populations andglobal health hasaparallel saging, andtextmessaging to createmulti-

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plexedconversationsthatallowthemto decision-making by healthcareconsumers “sense” their environment andmakedeci- in partnership with their physician, as well 2. Let´s MergeCoffeerooms sions about howtorespond. Of course,most as in partnership with their social network? (by Rudi Balling) usecombinations of thesestrategies. The Howcan we help them best usethe network revolutionary natureofthese changesis of health information andhealth providers My firstreaction to the article by Klaus A. clear to anyone whospeakstoayoung per- to manage their health? Howcan we create Kuhn andhis colleagueswas asking myself, son: “Whydoweevenhavelibraries? What methods forhelping consumers gauge the whetherthe firstauthor wasrelated to are newspapers for? Whywould Iuse e-mail credibility of an information source, andin- ThomasS.Kuhn, the authorofthe famous when Ican ‘text’? Whyshould Ipay for tegrateinformation sources dynamically for book “The Structure of Scientific Revolu- music?” agiven health-relatedquery?Finally, how tions”, published in 1962.Inthis book T. What doesthis have to do with biology can we ensure thatthe overalloutcome of Kuhn describesthe development of new andmedicine?Ithinkweare alreadyseeing thisnew health-information economyisim- paradigms in the course of the historyof changesinthe fabrics of both disciplines proved health? science stating:“Conversions willoccura that we can attribute to these trends. In One approach to these challenges maybe fewatatimeuntil, after the lastholdouts science, there is great interest among young to radically reconsider the structure of how havedied, the whole profession willagain scientists in open access publications, open we train scientists andmedical students, and be practicing underasingle,but nowadif- sourcesoftware,and opendatasharing. The howwemodelthe interaction between phy- ferent, paradigm”(p151). traditional silos thatprovidedprotection and sicians and patients.Inboth cases, Ithink Ithink there is no doubt that we arecur- controlled access to information arenot ac- that the principles of informatics can be the rentlyinthe midstofascientific revolution. ceptableanymore. This creates not only actualbasisofthe “curriculum”.Weshould The question is whichone:The revolution major social and economicchallenges acknowledge to young researchers and triggeredbythe progress in information and (which Iwill notaddress here), butcreates physicians-in-training that there is too much communication technology,where we have fascinating informatics research problems. knowledge for them to master in their developments such as the Turing-machine, Indeed,the availability of allthese data brains, andsowewill presentaframework the invention of the transistor,integrated sources creates amarketfor innovative in- for knowledge and information usethat circuits andthe computer? Or the revolution formaticstools that can connect people to stresses howtogather, organize anduse in- in geneticsand genomics providing com- the information theywant, when theywant formation in their professionallife,with pletely newinsightsinto the complexity, it, andinthe (integrated)formtheywantit muchless stress on large amounts of con- emergenceand regulation of biological in. Research about howthese tools should tent. Through problem-based learning, and systems? work will transcendany division between research projects, theywill getexperience Thearticle by K. A. Kuhn et al.“In- bioinformatics,engineering informatics, collecting andusing detailed information to formatics andMedicine”remindsusthatwe eHealth andpublichealth informatics, be- solveproblems, butthe curriculumwill be arealreadyatthe next phase, whichischar- cause the best tools arelikelytobegeneral entirely about collecting andmanaging in- acterized by the merger of thesetwo fields purpose. formation forthe purposes of research and andhow theyinfluenceeach other.The au- In medicine,the effectsofthis transition providing healthcare. thors provide an impressive description of arelikelytohaveanevenlargerimpact. Forpatients,weshould acknowledge that the “application space”ofthese newtech- Health careconsumers areincreasinglyre- health-relatedinformation is overwhelm- nologies andone wonders if their outline of jecting amodelofparentalistic healthcare, ing,and their physicianisacollaborator the convergenceofinformatics andmedi- wherethe physicianisaparent-figure who whowill help themnavigatethrough thisin- cine is alreadyanindicator of a6th “Kon- makesindependent decisions based on ac- formation, formulatequestionsand poten- dratieff-cycle”. cess to specialized information andasa tial actions, and help them makedecisions Being excitedand enthusiastic about the proxy decision-maker for the patient. Con- about howtoproceed.The primaryphys- scientific andeconomicpotential, or skeptic sumers nowhaveaccess to massive amounts icianwill be a“generalcontractor” for andreflectiveabout the social and ethical of information on the web, andaccess to health information,who will work with the risksinvolved is oneside of the story. other consumers with similarhealth issues, patient to find “subcontractors” that can Equallyinteresting is the question of how and awillingness to share their experiences, provide specialized servicesand informa- we,asascientific community,cope with the treatments,and opinions.Evenaccess to tion that the patientneeds. challenges of interdisciplinaryresearch. testsofpotential medical relevance, such as In summary,current trends indicatethat Kuhn et al.argue for astrengtheningofin- large-scalegenotyping of an individual’s ge- an information-processing metaphor for terdisciplinarycollaboration andeducation. nome, is nowavailable“direct to consumer” scientists,healthcareproviders andpatients It is mucheasier to talk about interdisci- along with webresources to assist in the is amore realistic model as we move for- plinarity than to practiceit. There is no interpretation. The implicationsofall these ward. If this is true,the research oppor- doubtthat, quoting Leland H. Hartwell [3]: activities for the informatics research agen- tunities for bringing it to reality areex- “The next generation of students should da aretremendous: Howcan we support tremelyexciting. learn howtolook for amplifiersand logic

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circuits, as well as to describe andlook for ing/informatics. Iamalsoagreat fandefin- clear medicine,molecular biology, cardio- moleculesand genes.”But howdoweteach ing jointresearch projectsand workshops, vascular surgery, genetics, radiology,inter- the ability to work in an interdisciplinary to fosterlinksatthe institutional andper- nalmedicine,dermatology,orthopedics, environment? Howshould future curricula sonallevel andtoencourage team-work at a biometry,and epidemiology.The particular forbiology andinformatics look like? high scientific level. listoffields is relevant because muchofthe “Depth or breadths?” Iamworried thatall of this will come papercan be seen as an attempt to discover Kuhn et al.describe the cultural gapbe- will come too late.Weneed to startmuch andclassify the common biomedical in- tween classical natural sciences (e.g.chem- earlier. Thereare alot of complaints from formaticsactivitiesalreadyongoing in these istry, biology, physics)and engineering and ourcolleaguesteaching firstyear biology separatedisciplines. In fact the recognition informatics. Ispent some time duringthe about adeclininglevel of the students pro- of thiscommonality,alongwith the increas- lastyearsintalking to engineers, physicists, fiency (and interest)inmathematics.At ing relevanceofinformatics to biomedicine, mathematicians andcomputer science/ least in Germanhighschools one can ob- is undoubtedlythe major impetus for the informaticsprofessionals trying to entice serve adramatic degradation in the import- creation of the interdisciplinary graduate themfor joint research programstackling ance giventomathematics,physics and bi- school. Such an endeavor is trulyvisionary, the complexity of biological systems. Ihad ology.Parents aremore worriedabout get- going farbeyond most academic biomedical to learnthatmanyofthese colleagueswere ting their children through highschool at all, informaticsprograms, many of whichare as scared of biologyasbiologists areoften opening the doorstosoft(er) disciplines and struggling to achieve departmentalstatus, scared of mathematics.Nevertheless, the alack of appreciation forasolid education letalonethe status of an entire graduate interest and the excitement to bridgethe gap in natural sciences. school.Ye tthe shear breadth of activitiesde- of disciplines andgobeyond one’s own Unfortunately this trend is amplified by scribedinthe papermakes it clear thatthere “domesticculture”was enourmous. many of our leading politicians. We are areenough biomedical research problems to It is not so longago, that mathematicians, heading foradisaster,and our political justify the creation of an entire graduate computerscientists andphysicistswere leadership still braggs about howlittle they school, so it is likelythatthis effortwill not lookeddownupon by their colleaguesif understand about mathematics andgenetics. be the last of itskind. theydevoted their research to biological Thewatersmightbemuddy andthe logic In ordertocreateagraduate school the problems.Apparentlytheydidn’t make it in might be fuzzy,but the message is clear: manyactivitiesneed to be organizedinto their ownhardand stringent discipline.This Informatics andmedicine will converge. separatebut overlapping units.Inthe US haschanged. Thegrand challenges of the Kuhn et al.giveusavaluableorientation on such unitswould be calleddepartments. future have been recognizedtolie,not howtostructurethe bewildering hetero- Thus, the four classificationsinthe paper exclusivelybut increasingly, in understand- geneityand opportunities of cooperation of suggest separatedepartments of bioin- ing the complexitiesofbiological systems. thesefields.AsafirststepIsuggest to formaticsand systemsbiology,bioengi- Andthis is recognizedbythe best and the mergethe coffeerooms for our students and neering informatics, health informaticsand brightest in these “hardand stringent” dis- faculties. Then allthe rest will follow. eHealth, andpublichealth informatics. This ciplines. classification is similartoone that we usein My suggestion is to putthe emphasison our University of Washington (UW) Bio- our ability to talk with each other acrossthe medical andHealth Informaticsgraduate various disciplines. Talkingtoeach other 3. TowardsBiomedical program (BHI): biology informatics,clini- requires eitherthe samelanguage or at least Informatics as aScientific Field cal informatics, and publichealth in- some basicknowledge in the foreign lan- formatics. We neverconsideredincluding guage.Mathematics is THElanguage if we (by James F. Brinkley) bioengineering informaticsinour program want to tackle the issue of predicting how because the UW already has averystrong biological systemswill behave in case they This paperbyKuhn et al.[1] is the result of bioengineering department, many members areperturbed. Information science and aset of meetings among leaders of twouni- of whichare involved in some aspect of technology could not existwitoutmathe- versities in Munich, the goalbeing to imple- computing.Onthe other hand we do collab- matics at the heartofit. ment an interdisciplinary graduate school in oratewith faculty in bioengineering, bring- Iamnot sure whetherIagree with the biomedical informatics. Members of the ing expertiseininformation andknowledge suggestion made by Kuhn et al.that“…the group, whoare the authors of this paper, are management, whichthe bioengineering fac- most effectiveway of changing the patterns generallythe leaders of biomedical,techni- ultyare generallynot expertsin. Thus,a of scientific education is to address the level cal andmanagementdepartments at the two case could certainlybemadefor including whereteaching andresearch meet:MSc and universities. Specificfields representedin- bioengineering informatics, especially if PhDprograms”. Ifullysupporttheir propo- clude medical informatics, bioinformatics there is notalreadyaseparatebioengineer- sal to set up coordinated andcombined andsystems biology, robotics, computer ing department. coursesand research trainingfor advanced architecture,software engineering, data- One difference in terminology appearsto students in medicine, science and engineer- bases, algorithms, augmentedreality,nu- come fromthe useofthe term“bioin-

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formatics”. In the paperitisstatedthat“the data management andintegration,visuali- to more robustlydeal with international fi- goal of bioinformatics is to understand the zation,information retrieval, andsociotech- nancialshocks thanwedid in pastcenturies molecularmechanisms,their geneticframe- nicalissues. As noted severaltimesinthe without the webofeconomicdata shared by work for diseases andtheir responsiveness paperthese informaticsissues occurin central banks globally. And we would not be to therapy…”,yet many of the research many if notall of the four fields describedin able to anticipate thenow palpablerevol- problems describedinsection 3.1involve the paper, whichiswhere the commonality utions in systems biologyand genome correlating genotypewith phenotype, of these fields is seen to lie.Thus,insome science that foreshadowtruly personalised whichoftenmeansdealing with informa- ways figure 2ismisleading:infact arrows medicine,without IT.The humangenome tion at allstructural levels ranging from shouldbedrawn between each boxonthe project after all,inthe endhinged on com- genestothe whole organism. Although it is left side andevery boxonthe right side,not puters to pull together shot-gunnedgenetic true that the common understanding of just those on the samelevel. fragments into aplausible pastiche of a bioinformaticsisthatitdealswith the mo- This commonality leadstothe notion whole genome. lecularlevel,the need to correlategenotype that there is acore set of informatics Thetechnologicalchallenge in bringing with phenotype hasled many researchers to methodologies that underlies allfour of the together systemsbiology andclinical medi- move beyond the molecularlevel.With the areas. Thus,inthe BMIprogram we would cine,whatwenow seem to be calling trans- completion of the various genome projects callthe areas in the paper applicationdo- lational bioinformatics [4], is huge.This this migration will only become more mains (which in our case arebasicbiology, union “from celltosystem” hasbeen long prominent, andinfact severalgroups have clinical medicine andpublichealth),and we anticipated, andBlois back in the 1980sal- attemptedtoextend the definition of bio- define core informatics domains as those readythenwrote of the nature of ‘vertical informatics to include allofbasicbiology, areas thatunderlie biomedical informatics reasoning’ that takes placeinclinical deci- thereby automatically including such fields research in allthe application domains. sions,from low-levelbiology through to as physiological simulation andsystems These areas are generallydrawn from and clinical andorganisational levels [5]. Kuhn biology(whichmanywould argue arethe includepre-requisites from underlying dis- andhis colleaguespaint us abroadand ex- samething).One reasonwechosenot to use ciplinessuchascomputer science or electri- citing pictureofmanyofthe information the term“bioinformatics”inour program is cal engineering, butthe coursesthatteach technology challenges thatweface in that to avoid thisambiguity. themare tailoredtothe biomedical domain. journey [1]. Not least of theseisthe huge Asecond differenceinterminology is in Thus,asthe newgraduate school is devel- representational andinferential challenges the useofthe word “informatics”. In the in- oped it mightbeworthwhileconsidering the of build knowledgestructures at different troduction it is stated thatthe European use addition of aunit that could teach these core scales and expecting themall to effectively of thisword corresponds moreorless to the informaticsareas. Such aunit would for- interact andgeneratemeaningfulinforma- term “computerscience” in Englishspeak- malize the commonality thatisalreadyevi- tion [6]. They also note in passing that hu- ing countries.Yet the many research prob- dent in the descriptions seen in the paper, mans themselvesare part of the big picture, lems describedinthe papergobeyond what andwould help transformthe fieldofbio- andthatthere areculturalbarriers to be is generallytaught in most US computer medical informaticsfrom acollection of breached if we aretobring bioscientists and science departments,including activities looselyconnected application areas to a clinicians together. likeimaging, signalprocessing andcom- scientific or engineering fieldinits own Ihavesaidinthe past thathealth in- putational modeling, whichare generally right, with its owncore principles and formaticsis“the study of howclinical taught in electrical engineering or bioengi- methodology distinctfrom anyotherfield. knowledge is created,shaped, shared and neering departments.Thus,the impression applied. Ultimately,itisthe study of howwe is that the useofthe term“informatics” in organise ourselves to createand runhealth- the title of the paperimpliesall these activ- careorganisation”[7]. In other words,we ities applied to biomedicine.Suchabroad 4. Systems Informatics and the cannot separatethe cognitiveand the social definition is appealing because it helps to Socio-technology of Bioscience from the technical, andthis lessonisastrue unify many activitiesunderone umbrella – of the challenges for e-health at the clinical althoughsuchaunification would not occur (by Enrico Coiera) levelasitwill be fortranslationalbio- in the US givenour morenarrowdefinition informatics. Indeed,ifweare to imagine an of computerscience. Theagenda of informatics researchersal- informaticswhich is allabout integrating Giventhe broaddefinitionofinformatics mostinevitably returns to technology,and different biomedical,clinical andorganisa- as definedinthe paper, it mightbeusefulto for good reason. Information andcom- tional systems–letuscallitasystemsin- listthe informatics research issues thatare munication systems aretransforming our formatics –thenIwanttoargue againthat describedunderthe four categories. These world in apowerful way. We would not be we mustput ourselves into the middle of issues includebut arenot limited to: signal able to anticipate climatechange without thatsystem as primaryactors whosebe- andimage processing, simulation andmod- highlysophisticated computationalmodels haviour needstobemodelled,alongwith eling,dataand knowledge representation, to alertustoits risks.Wewould not be able moleculesand medicines.

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At present the cross-systemsinformatics doesnot strictlyimplyco-regulation or a veloping new, safer and moreeffectiveICT research agenda is drivenlargely by the causal relationship in biochemicalpro- systems thatspandifferent social systems technicalchallengesofinformation inte- cesses.Scientists employadditional back- likebioscience, clinical medicine andthe gration,and an analysis based upon an as- ground knowledge to makeassessments citizen.Each is its ownuniverse, andtech- sumptionabout the wayscientists “do about the weightofevidencebehind known nology will not ‘normalise’these universes things around here”. In many ways the bio- relationships,orthe likely causal relations into one. Instead it musthelpbridge these science informaticsagenda is whereclinical thatmightbeimpliedthrough associa- universes, whichare ever evolving, ever dif- informaticswas in the eighties, wherewe tional studies.Whosebackground know- ferent, ever new. used idealised modelsofwhatwork should ledge triumphs in aresearch team’s debate is be,and were blind to howthings actually still no doubtoftenatribal affair. were.The last20yearshaveseen agrowing Latourhas writtenvividlyabout such so- sociotechnical critique, for example from cial aspectsofscience [10] andour new 5. Enhancingthe “Human influential commentatorslikeBerg[8], who challengeistoembrace arichersociotech- Factor” into theFramework begantohighlighthow often seemingly nicalagenda so thatwecan craftsystems well-designedITfailedwhenitwas finally that trulylink benchtobedside [11]. The (by Fabrizio Consorti) put intothe clinical workplace, because it’s ‘secret’work that givesrisetobioscience designers fundamentallymisunderstood data andits interpretation is somethingwe Multidisciplinary integration at research howclinical work wasdone.The mantra of really need to understand,because what and educationallevel is surely the right way ‘re-engineering’ clinical work for efficien- bioscientists do today, clinicians will do to- to proceed andface the relevant challenges cy,and of clinicians andnot technologists morrow. Theclinicians of the near future thatthe inner complexity of healthcaredo- needing to change their attitudes wasthe will be awash with genetic andbiomarker main put forward, especially when the man- initial informaticsresponsetothis clinical data from their patients,and theywill often agementofinformation is concerned. The push-back. have little concrete information to guide paperofKlaus Kuhn andco-workers[1] But we nowknowalittle better. Clini- them to what theyall really mean.Asever, representsapowerful efforttowardacom- ciansusually resist change for very good we have muchmore data than we have prehensive framework for an inter-profes- reasons –westill build systemsthathelpad- knowledge about what those data might sionalcurriculum in health informatics. ministrators morethanclinicians.Westill mean. Nevertheless, to the tasteofaphysician– build electronic record systemsthatonthe Socio-technicalsystems science has likeIam –anessentialingredient is still face of it takelongertouse thanpen and arisen in responsetothe challenges of scarce in the recipe,inits dual flavorof paper, even if there is abig downstream understanding complextechnicalsystems “caregiver”and “patient”:the human factor. payoff in safety, quality andefficiency. And that areembedded in ahuman world [12]. It In the paper, social sciences are quoted in we build systemsthatstill ignorethe fun- hasarisenmoststrongly because the unex- conjunction with economics, ethics or with damentallycomplex natureofhealthcare. pected interactionsbetween humans andar- passive concepts like“acceptance” or “im- Clinical work is not likework in afactory, is tefactsoftenproduceunanticipated errors, pact”, along with functionalexpressions as notlikeapilot’scockpit nor like abank, and system failures, cost overruns andbreak- “time-saving”or“cost-saving”. Moreover, many of the models of workflowautomation downs.The socio-technicalviewattempts to topicslikethe Internetorthe web, intended thatwork so well in other settingsill-fit understand the contribution of phenomena as social environments,are neverexplicitly clinical practice, whichisfluid,multi- at the humansocial leveltothe performance mentioned. Maybe theseremarks come just tasking, interrupt-driven[9], complex, and of technicalsystems,and vice versa. It is fromawrongfeeling,based on amisunder- wheretreatment is oftennecessarilybe- thus the missing system in anybold re-con- standing of the sense of some sentences, but spokebecause of patientdifferences. ceptualisation of ourfield as asystems in- allthe sameit’saworth discussing the di- We should therefore alreadyintuitively formatics.Whatistherefore needed is away mensions of the “human factor” in deeper understand that bioscientists do morethan of describing events at the socio-technical details. analysecomplex data sets. Before the ex- level, connecting themtosystem behaviours Multi-professionalism is notjusta periment, before the analysis, there is a andthencetoartefact design. We need to get matterofexchange of competenciesbut complexsocial process, in some waysimilar ‘technical’ about what we mean when we mainlyanencounter of professionalpara- to the processes thatclinicians undertake describe socio-technicalevents, ‘technical’ digms, aimedatthe definition of acommon before atreatment planisagreed upon. And about what we want from system design, meta-paradigm,bridging cultural gaps.Mu- onceananalysisisdone,its meaning is de- andweneed to work both alongside technol- tual awareness of the different pointsof batedand shaped socially,because of the in- ogists to shape technology,aswellaswith viewisasimportantasthe acknowledgment herent ambiguity andincompleteness of our the processes,organizationsand cultures of the different, specific technicalcom- knowledge,and the various perspectives within whichtheywill be embedded[13]. petencies.Thenmycontribution to the dis- scientists bring to such discussions.For Socio-technicalsystems thinking is an cussion will bring an up-to-date clinical example, co-expression of cellularproteins essentialprerequisite to the process of de- point of view, by briefly summarizing the

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role of the web-based social cooperative the web–inforums andblogs –has anar- itselfisnot inherentlyempowering) and environments in the evolution of current rative format. to quantitative research aimedtomaxi- “master narratives” relatedtothe healthcare Theterm“narrativebased medicine” mize/minimizeaparameter butalsoto domain. Concepts likewellness and illness, wasbornbythe endofnineties, in aseriesof qualitative research,aimedto“know- process of care, patient-caregiver relation- papers on the British Medical Journal[21], ing”, also in termsofpersonalcommit- ship arechanging in their social represen- based on an original book by Katrin Hunter ment of the intendedusers of ICT sys- tation andICT is afactor of the process.This [22].NBM is anovel approach to medical tems. trendwill be framedinthe context of the two practice, as areaction to atechnology- 3) From an educational point of view, asys- conflicting paradigmsofevidence-based drivenpracticelacking empathy. It hasbeen temic approach should be adopted,al- medicine (EBM) and narrative-based medi- often opposed to the other raising profes- ways keeping in mind the whole while cine (NBM). sionalparadigm of the evidence-based discussing the detail andhighlighting the Narrative hasalwaysbeen the main way medicine (EBM),evenifthe competition linksand the relationships among di- to communicateknowledge about factsin hasinfact no foundation, because NBMand mensions andcontexts. the world. Even scientific knowledge EBMsimplydefine twodifferent, paired 4) Aparticular attention shouldbede- needsthe supportofnarrative to be com- dimensionsofmedical knowledge. voted to emergingtopics for research municated:ascientific paperisthe “story” However, sinceits moreknown defini- and educationlikethe management of of an experiment, even if it is expressed in tion by Sackettin1996 [23] as “the con- narrative knowledge,alsoinconsider- aratherformalizedstructure. More spe- scientious, explicitand judicious useof ingthatinafewyearsthe generationof cifically,narrative knowledge is focused currentbest evidenceinmaking decisions “digital natives” willbeadultand will about understanding the situation of asin- about the careofindividual patients,in- have an active roleinsociety.For gularpersonthrough cognitive, symbolic tegrating individual clinical expertisewith them, booking an appointmentorac- andaffectivemeans. Amaster narrative(or the best availableexternalclinical evi- cessingpersonalhealthdata by theIn- meta-narrative) “isaglobal or totalizing dence” EBMproduced an uninterrupted ternetwill be just aroutinarytask, cultural narrativeschemawhich orders and flow of discussion, whichrevealshow sensi- while probablytheywill be demanding explains knowledge andexperience” [14]. tive is the topic of representing medical for much more sophisticated possibil- It actsasanorganizing principle which knowledge among physicians. ities of interaction. providessense to every-dayexperience EBMasintendednowadayswould be andsynthesizessharedideas in an arche- virtuallyimpossiblewithout the availability typical way. Examples of master narratives of digitallibraries. This last point,together aremyths andpopular tales, the narration with the diffusion of systemsfor at-distance 6. Informatics and Medicine of national historical events,masterpieces learning based on aconstructivist approach, from aDeveloping World of literature. Personalidentities too are highlightsthe importanceofconsidering the narrativelyconstituted [15], as complex ongoing shift fromastatic representation of Perspective(by AliDhansay) networks made by self-narration andbythe knowledgeasa“content” (accurate anduni- stories told by others about ourselves. In versal representation of some prior reality) When Iwas invitedtowrite acommentary this context, identityisthenasocial con- to aconceptofknowledge as an enactment on the paperbyKuhn et al.[1], Iwas uncer- struct andevery mean affecting in some of “knowing” in agiven context [24]. Focus- tain sinceIsawmyselfasbeing ‘informatics waysociallysharednarrativeshas arel- ing on the contextualizedact of knowledge naïve’.Onthe other hand,Ithought Icould evantconsequencefor everyone [16]. rather than on the content in fact strongly bring to the discussion amultidisciplinary Technologicalinnovationssuchasthe In- reduces the differencebetween “knowing” medical background (pediatrics andchild ternethaveincreased the interconnected- and“learning” anditblursthe boundaries health with research experience in the same ness of groups.The webhas contributed to between knowledge management systems fields), as well as nutrition research and re- the erosion of traditional community life and e-learning systems[25, 26]. search management experience at asenior by decreasing the importanceofproximal, Whichconsequences for research and levelinadeveloping countrysetting –South local sitesofsocial influencewith respect education can we drive from allofthese Africa.Some might argue,justifiably to my to the globalcommunity[17]. Basiccon- considerations? mind,thatSAisa‘hybrid’ of adeveloping cepts likehealth, illness and risk con- 1) Thereshould be an explicitinvolvement (major part)and developed country, which ditions areevolvingintheir meaning [18] of anthropology,sociology, social psy- lendsitselftonovel research opportunities andthe evolution is stronglyinfluenced chology andeducation sciences in the andchallenges. Iconsider the invitation as a not onlybythe great availability of health- blendofmulti-professionalism,for an learning (for myselfinthe area of in- care-relatedinformation on the webbut effectivecurriculum andacreativere- formatics)and asharing opportunity (from also by social environments like virtual search environment. aSouth African, research and medical per- communities[19, 20]. As amatteroffact, 2) Attention should be devotednot onlyto spective). the largest part of knowledge present on technologic development (technology in

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6.1Introduction terdisciplinaryresearch to tackle the com- 6.3The ChallengesofIDR plexnature of disease andill health in “Knowledge of what is, doesnot directly today’s globalizedsociety,and on the When setting up their graduate school, one openthe door to what should be.”– Albert other,seekstospecifically establishthe accepts thatthe authors would have taken Einstein roleofinformatics andits disciplinesas into account the comments of the National part of thisimportantchallenge.There is AcademyofSciences [30] andothers Theabove quote, in effect,exhorts one to no doubting the roleofIDhealth research [40-43]regarding IDR, viz. (not in orderof move towards action,i.e. translating knowl- [30-35]. ID health research is based upon importance) edge intooutcomesbeneficialfor the health the recognition of diversity/differences, ● need for structurestosupportinterdisci- andwell-being of populations [27, 28]. It yetagreeing upon the ultimateobjective of plinary research; captures the essence of what Kuhn and aunitaryoutcome,viz.improvementof ● job opportunities for IDR; colleaguesfrom twoMunich universities health andwell-being for individuals and ● evaluation of IDR andscientists andout- andthe Munich Heimholz Center have populations. Interdisciplinarythinking is puts will need modification of the peer- achieved, with the establishment of a‘re- rapidlybecoming an integral feature of re- reviewprocess to includeresearchers search-orientedinterdisciplinaryGraduate search as aresult of four powerful with interdisciplinary expertiseinaddi- School’.Their paperneatly captures the “drivers”[30]: tion to researchers with expertiseinthe ‘knowledge of what is’, as well as the ‘what 1) the inherent complexity of natureand so- relevant disciplines; should be’parts of the abovequote. They ciety; ● funders’ views on IDR andits support; have movedfrom theorytopracticeina 2) the desire to exploreproblems andques- ● roleofprofessionaland academic so- sense and should be commended for this. tionsthatare not confined to asingle dis- cieties; The bottom line,ofcourse,will be the cipline; ● shortage of health workersand scientists/ evaluation of whetherthe graduate school 3) the need to solvesocietalproblems; researchers in developing countries; reached its intended goals –akeenly 4) the powerofnew technologies. ● the success of IDR groups depends on in- awaitedresult in lightofthe dearth of docu- stitutionalcommitment andleadership; mentation of such experiences [29]. It is encouraging to note that Kuhn andcol- ● promotion,tenure,and resourceallo- leagueshavemoved beyond the bedside, to cation; the community andpopulation level. The ● institutions areimpededbytraditions 6.2Interdisciplinary Research keywords that stand out in the paperare col- andpolicies thatgovernhiringpractices; (IDR) laborative research and structuredinterdis- ● the success of IDR groups depends on in- ciplinary education.Whilesomewhat ‘lost’ stitutionalcommitment andresearch AdefinitionofIDR is appropriateatthis within figure 1and not repeated againinthe leadership; time: “Interdisciplinaryresearch is amode text, the critical phrase ‘Informatics in Sup- ● newmodesoforganization andamodi- of research by teamsorindividuals that in- portofTranslationalResearch’captures the fied reward structure to facilitate inter- tegrates information,data, techniques, essence of their paper. disciplinaryinteractions; tools, perspectives, concepts,and/or the- Kuhn et al.havealsotraversed the inter- ● professionalsocieties have the opportun- ories from twoormore disciplines or section of bioinformatics andmedical in- itytofacilitate IDRbyproducing state- bodies of specialized knowledge to ad- formatics(biomedical informatics) of-the-art reports on recentresearch de- vancefundamentalunderstanding or to [36-39]and cogentlyaddress the issues of velopments andoncurriculum, assess- solveproblems whosesolutions are publichealth informaticsand public ment, andaccreditation methods;en- beyond the scopeofasingle discipline or health, with prevention as an ultimatetar- hancing personalinteractions; building area of research practice” [30]. get. They present apractical framework of partnerships among societies; publish- howinformatics can act as driver/enabler/ ing interdisciplinary journals[44] and “It took an ex-physicist –Francis Crick– interlocker in the continuum from mol- special editionsofdisciplinary journals and aformerornithology student –James eculestopopulation via the fields of bios- andpromoting mutualunderstanding of Watson –tocrack the secret of life.They ciences, medicine andpublichealth. The disciplinarymethods,languages, and shared certain wanderlust, an indifference authors callfor collaborative research and cultures; to boundaries.”– Robert Wright structuredinterdisciplinaryeducation in ● learning from collaborative interdisci- four priority areas: bioinformatics andsys- plinary research partnerships among uni- It is refreshing to see thatinformatics re- tems biology; informatics for biomedical versities, industry, andgovernment. searchers are lookingatconcrete ways of engineering; health informaticsand contributing, nay, being part of the current e-Health; andpublichealth informatics Theabove pointsimmediately present a movement towards translating knowledge andpublichealth. bigger challengetoresearchersindevel- to practice. Thepaper reflects, on one oping countries,faced with problems of hand,the universal callfor employing in- rudimentary health systems, poor infra-

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structure andhuman resources for health, 58%ofthe minority white population (9% 6.6What Are the Implications andlow spending on research and devel- of SA population) hasnoprivate medical opment. Table1andFigure 1below illus- cover. These differences in health carefi- of the Paperfor Developing trate the situation well. nancing areimportantinthe context of Countries? funding of ‘high tech’ innovations. Arecent survey of the roleofgenomics medicine in 1) Thereisaneed to embrace the callfor in- 6.4IDR Leading to Translational developing countrycontexts, whichin- terdisciplinaryresearch andeducation, Research cludedSouth Africa,arguesthatthere is a andtohighlightthe roleofinformatics as rolefor investing in genomic sciences in de- an enablerinthe whole process from While the lack of funding, health infrastruc- veloping countries.Theyposit that investing benchtobedside to the community. tureand resources can be seen as added im- in the field, identifyingniche areas within it 2) Collaboration with developing countries pediments to IDRindeveloping countries, andwithin areas of localinterest,and build- on an equalfooting should be encour- thismakes it even moreimportantto‘work ing life sciences-based capacity around aged. smartly’ in multidisciplinary andinterdisci- such knowledge could contribute to improv- 3) Realization thatthere arecontext-spe- plinary collaborationsthanever. Similarly, ing localhealth, as well as potentiallystimu- cificissues thathavetobeconsidered, the need to fast track knowledge translation lating economicdevelopment. Therole of e.g.local technological, funding, popu- in these countries is just as urgent –inter- private partnerships in thisregardisalso lation dynamics. Recognition of diver- ventions whichare cost-effectiveneed to be highlighted[46] sity anddifferences. implemented. In this regard,the framework Theareaofpersonalized medicine was 4) Foster debate around ethics (of genomic for the integration of informaticswith also mentionedbyKuhn et al.inthe con- medicine andpersonalized medicine), health as presented by Kuhn et al.needsto text of publichealth andgenomics. Again, information access, education andsocial be tested andimplementedindeveloping in the South Africancontext, issuessuchas issuesindeveloping countrysettings. countrysettingsasamatterofurgency. race andethnicity andthe medicalization 5) Personalizedmedicine also raisesthe of race areissues thatnumerically andethi- question of identification of patients who cally assume muchgreater importance aremostlikelytobenefit. 6.5 Context Is Important thanthe BiDil debate in the USA[47]. 6) Ensurepartnershipswith, forexample Theseare fertile areas of potential research private sectorare conducted ethically While there aremanysimilaritiesinhealth for interdisciplinary teams, including in- andopenlyfor the benefitofpublic challenges facing developing countries formaticians. health. comparedtodevelopedcountries (e.g. health andnutrition transition to ‘diseases of lifestyle’), there arealsomajor differ- ences, e.g.the massive burdenofHIV and Table 1 Researchers and GERDin World World World World AIDS, tuberculosis andmalaria in Africa. developing anddeveloped population researchers GDP GERD Health information systemsare not effi- countries Developing countries 79% 28% 42% 20% cient, impacting on resourceallocation and evaluations of the health system.Develop- Developed countries 21% 72% 58% 80% ing countries including South Africa are GERD=gross expenditure on research and development experiencing severe shortagesofhealth carepersonnelinthe publicsector to Eu- rope andNorth America, as well as to the WHO!Poverty andinequity(in general andinhealth) areinexorablylinked,and thisisreflected in the notunexpected dif- ferentialsinmorbidityand mortalityfound in South Africa (skewed unfavorablyto- wards blacks).Inequality andinequityat alllevelsand sectors present many chal- lenges to the goal of improving the health of nations[45]. In South Africa,93% of the majority black African population (80% of SA popu- lation) hasnomedical aid(insurance) andis dependent on the publichealth sector, while Fig.1 Researchers per million inhabitants –year 2000 (source: NationalResearch Foundation,South Africa)

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6.7Conclusion environments [53]. Furthermore,the new 7. On Global Trends interactionsbetween humans andmachines One trusts thatnew synergieswill be and Challenges(by Antoine thatare currentlyappearing will require new forged between the various disciplines, research disciplines,suchasthe Web e.g. medical informaticsand bioin- Geissbuhler) science, coinedbythe Webinventor,Tim formatics,based on the promise outlined in Berners-Lee[54]. the paperbyKuhn et al.Toquote the pres- Enabling information andknowledge to In this interconnected,highlycomplex ent director of the NationalInstitutes of flow andgrowfrom molecularscaletopa- landscape,multidisciplinarycollaboration Health, Dr.E.A.Zerhouni: “Itisthe re- tients andpopulations is one of our ambi- will indeedbethe rule for progress. Achal- sponsibility of allofuswho areinvolved in tious goals andgrand challenges. This lenge will be to foster theright mix of hard health research to translate the remarkable “info-bioconvergence” hasanenormous sciences,life sciencesand social sciences scientific achievements/innovationswe potential to improve our fundamental necessary to apprehend theproblems at hand. arewitnessing intohealth gains forthe knowledge in life sciences, the ability to The collaborative toolsofthe social Webwill nation” [28]. Of course,this should be ex- translate it into betterand individualized helptosomeextent,aswill theknowledge tended to the globalcommunity, andes- patientcare, andwill open newwaysofstu- engineering tools broughtbyinformatics re- pecially the developing nationswith their dying andsteering ourpressuredhealth and search.Itishowever likelythat thecurrent greater burdenofdisease. healthcaresystems.Further down the road, educational modelswill not be able to cope Theauthorshavetaken abold step in es- many foresee the additional convergence with theincreasedneeds for cross-disciplin- tablishingthe Graduate School in Munich with nanotechnologies andcognitivesci- aryskills andwill have to be revisited. –ineffect demonstrating the move from ences, thusrealizing an unprecedentedsyn- Finally,wemust realize that theknowl- theorytopractice. To my mind,there is a ergy of skills andknowledge [50]. edgesocietyisbecoming global, bringing dearth of information on such initiatives; Although the wayseemsclear andthe newchallenges and newopportunities. In little hasbeen documentedabout howre- future bright, there aremanyobstacles that order to limit theprogress of the digital di- searchersexperience interdisciplinary need to be overcome,manyofwhich lie videbetween those whohaveaccess to these health research in practice. Furthermore, partly within the scopeofbiomedical in- newtoolsand those whodon’t, we will have factors such as career path opportunities, formatics, and mostofwhich will require to learnhow to better share knowledge, and reward andrecognition, evaluation crite- newforms of collaboration,ofresearch,and makeitrelevant to multiple contexts, in ria,long-termfutureetc.are allimportant. probablyofeducation. order to solvereal and urgentproblems, and It is therefore imperative thattheydocu- We mustbeabletoconnect information in particular those of the health systems. For ment andshare their experiences, which fromthese various knowledge domains. example, it is likelythat biomedicalin- will be keenly awaitedbythe scientific, Connectivity of the infrastructure from formatics, e-health and telemedicine will en- academic,medical,and informatics frater- multiple, heterogeneous,and distributedre- able newsolutions forthe currenthealthcare nity. sources is likelytoevolvefrom the current workforce crisis, helping to train,informand Boththe medicaland informaticscom- data andcomputational grids.Connecting supporthealthcare professionals and pa- munities need to extendthe discourse the physical andthe information world will tients in the poorest and most remote parts of initiatedbyKuhn et al. to the challenges require newabilities to identify, track,and the world,wheretheyare most needed [55]. posed by developing country settings.It link objects from both worlds.But the main Enthused by these newpromises,we is onlyproperthatthoseareas of the connection challengewill be the semantic should always keep in mind that the overarch- worldmostbeset by ill healthshouldbe integration of these mostlydistinctdo- ing goal of ourefforts, from fundamental re- part of themovetowards working smartly mains,asexemplifiedbythe IUPSPhysi- searchtothe bedsideactivities, from mol- andinaninterdisciplinaryfashion.South ome Project[51]. ecules to populations, is to improve thehealth Africa hasthe unenviable reputation of With the advent of our knowledge so- and quality of lifeofthe peopleofthe world. beingthe worldleader in manydisease ciety, we need to rethinkthe waywedesign areas such as HIVand AIDS, tuberculosis research.Digging in the massive amount of andfetal alcohol syndrome. With its di- data that is made availableonthe Web, will versity of populations (exemplified by its need newresearch paradigms, potentially 8. From Molecules to Popula- rainbownation tag)and in burdenofdis- moving away from hypothesis-drivenre- tions Is Only OneDimension ease patterns,the country lends itself to search (whetherinvivo, in vitro or in silico) opportunities for collaborative research into data-drivenresearch [52]. At the same of Health and BiomedicalIn- on informaticsand healthbetween north time,citizensofour knowledge societywill formatics (by William Hersh) andsouth[48, 49]. have the opportunitytoreshapethe way their information can be used for research, potentiallydisplacing the centers of knowl- Thepaper by Kuhn et al.[1] describing the edge production away from the academic spectrum of health andbiomedical in-

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formatics providesanexcellent elucidation whetherbiomedical research organizations, the personal,health care, andpublichealth of the subjectdomains that describe our health caredeliverysystems,orpublic levels.This will requireresearch andedu- field. But the subjectdomain is onlyone di- health agencies. cational programsthatacknowledge the mension of informatics,and other important Thepaper by Kuhn et al.acknowledges core similaritiesacrossthe subjectdomains dimensions must be describedand explored. that allsubjectdomains of biomedical in- of health andbiomedical informaticsand In my commentary,Iwill set forth my own formaticshaverelated areas, whetherthe trainnew practitionersand academicians in viewofinformatics,health andbiomedical statistical methods of bioinformatics, the this point of view. informatics, and the dimensionsthatthe people andorganizational issues of medical fieldcovers. informatics, or the social and economicas- First, what exactly is informatics? The pectsofpublichealth. Iwould argue that paperdiscusses this only briefly,noting but theserelated areas arenot necessarilylim- 9. TheValue Chain expressing some dissent the European view itedtoany particularsubjectdomain. “from BenchtoBedside” that informatics is fundamentallycomputer Examples include the application of quali- science. Iamgladtosee this viewchanging tative methods to bioinformatics[56] and (by Yunkap Kwankam) in Europe andbeyond. My viewofin- the need to be cognizant of genomics (e.g., formatics is that it is fundamentallyabout single-nucleotide polymorphisms or SNPs) Thepaper of Dr.Klaus Kuhn et al.[1] is well information, in particularwhathumans do andclinical data quality issuesingenome- documented(researched) and clearly with it andhow theyapplytechnology to im- wide association studies [57]. written. It captures the essence of the broad prove its usefor improving the human con- It is thus imperative for us to move spectrum of issuesspanning the continuum dition. Informatics is an integrativedisci- beyond arguing what adjectiveshould pre- from moleculargeneticstopublichealth pline,drawing upon areassuchasinforma- cedeinformatics (e.g., bio-,medical,con- policy. Thefact thatitelaboratesonthe quite tion andcomputational sciences, business sumerhealth, etc.) andinsteadfocus on the intuitivevalue of interdisciplinaryresearch and management, andotherfields,but also core attributesthatuniteall aspectsofin- in health informatics, is itselfindicative of deeply rootedinasubjectdomain. In the formatics andhow we applytheminhealth the imperviousness of the silos into which fieldofhealth andbiomedical informatics, andbiomedical informatics. Ourdiscipline research hasfallen. The reaffirmation is the subjectdomains range from biologyto is indeedinterdisciplinary, andsome of its thusverywelcome. medicine to personal andpublichealth. keyattributesreflect that. Informaticsisin- And althoughthe consultation on creat- Allbranchesofhealth andbiomedical in- tegrative, drawing on computational andin- ing the graduate program waslocal –limited formaticsare heterogeneous yethaveacom- formation sciences as well as business and to Germany –the challenges discussed mon intellectualcore.The bioinformatician management sciences, yetfirmlyrooted in a coveravariety of socio-politicaland eco- whoanalyzes gene expression microarray deep understanding of the discipline in nomiccontexts, andthus the paperisof data mayseem to have little in common with whichitisapplied,beitbiology,medicine, muchbroaderrelevance thantosingle a the clinical informaticianwho is trying to or health. typology of health system context. reconcilewith highlyinterrupted workflow Our academicdepartments mustrecog- of clinical carewith collecting high-quality nize thisfundamentalundercurrent of all information thatcan be used not onlyfor informatics. Oureducational programs 9.1Assessment of Health better patientcare, butalsotodrive decision should teach from this perspective. Not Informatics supportsystems andquality assessment. everyhealth andbiomedical informaticsde- Likewise, aconsumer health informatician partment or degree program mustcover the Thepaper mentions the importance of as- mightbefocused on helping an individual entire domain perspective, buttheyshould sessment andthe dearth of robust methodol- maintain optimalhealth, while the public performtheir research,teaching,and ser- ogiesfor such assessments.This is the crux health informaticianislikelytobefocused vice from the viewpoint of informatics. of the matter.Methodologicalimprove- on monitoring risk factors for disease in a Likewise, their educational programs ments in the assessmentofinformatics are community. should recognize there is no single career needed to convincingly chartinfluence Ye tall of these areas of health andbio- pathway within the field. What an in- pathwaysfrom health informaticsinterven- medical informaticshavecommon underly- formaticiandoesasajob is afunction both tions to health intermediate andfinalout- ing themes. Allare focused on the optimal of what he or shedid before enteringtrain- comes. This is thekey to unlockingfunding collection anduse of information.All would ing andwhatknowledge andskills he or she for the very promising research described benefitfrom technology systemsthathave gainedfrom thattraining. andsupportfor the marketing,deployment optimal usability,facilitate collection and The 21stcenturyprovidesexciting op- anduse of the fruitsofsuchresearch.Until useofhigh-quality data,and aimfor inter- portunities in health andbiomedical in- the returnoninvestment, or returnonvalue, operabilitybased on the best standards. All formatics. Improvements in information is demonstrated, the funding levels needed require attentiontothe largercontexts and technology provide us agrowing ability to to sustaininterdisciplinaryefforts will con- human organizations in whichtheyare used, useinformation to improve human health at tinue to be achallenge andthus an inhibitor

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to the change in culturewithin disciplines hanced knowledge translation”[60]. The focus lessonhealth as the absence of dis- that the papercalls for. fieldexaminesthe rolethatICT can playin ease, andthe attendantemphasisondisease Funding for publichealth informaticsis the actionsofindividuals,aswellassys- mechanisms,and moreonthe WHO vision in competition with other priorities, andthis temic factors that militate in favorofsuc- of an ecological balancebetween the physi- competition is especially fierce in resource- cessful transformation of availableinforma- cal,mentaland social dimensions of life. challenged health systems. Health, as a tion andknowledge intoaction.Italsolooks Thepaper concludes that “itisonly production function, showsanumber of at what informaticstools need to be devised through having expertsinone scientific dis- variables, waterand sanitation,for example, for capturing andsharing experiential(or cipline whohaveaprofoundunderstanding accounting for nearly 10% of the global tacit)knowledge,which unfortunately is of the other disciplines’terminology and burdenofdisease. A2008 WHO reportesti- compartmentalized in individuals. Can scientific culture, thattrueinter-disciplinar- matesthe economicbenefits of investing in health informaticsnetworks in supportof ity can develop ...”. Such interdisciplinary drinking-water andsanitation in several communitiesofpracticeserve as amodel understanding would greatly facilitate vis- forms: “health-caresavingsofUS$ 7billion for breaking down these silos,soastopro- ualizing andunderstand the big picture. ayear for health agencies andUS$ 340 mil- mote sharing of availabletacitknowledge? Then the boundary conditions that are lion for individuals;320 million productive Cansuchnetworks improve the useofex- necessaryfor information andknowledge days gainedeach year in the 15-to59-year perientialknowledge on asystematicbasis exchange between disciplines,and between agegroup, an extra 272million school at- within health systems? sub-disciplineswithin disciplines, in the tendance days ayear,and an added1.5 bil- ICT can remove distanceand time bar- value chainthatleadsfrom benchtoim- lion healthydaysfor children underfive riers to the flowofinformation andknowl- proved health, maybebetterunderstood and yearsofage,togetherrepresenting produc- edge for health andhelpensure that our managed. tivity gains of US$ 9.9 billion ayear;time collectiveknowledge is brought to bear ef- savings resulting frommore convenient fectivelyonhealth problems in individual drinking-water andsanitation services, to- countries,aswellasglobally.Itwould re- taling 20 billionworking days ayear,giving quireasystem whereall decision-making in 10. Envisioning theFuture– aproductivity payback of some US$ 63 health is supported by an ICT-mediated billion ayear.“ [58]. The abovefiguresare knowledge-coupling system whichbuilds Informatics and Collaboration takenfrom astudywhich showsatotal on Weed’s vision [61] as adaptedbyKwan- (by NancyLorenzi) payback of US$84billion ayear from the kametal. [62] andensuresthat: a) all US$ 11.3 billion peryear investment needed relevant options known to the health to meet the drinking-water andsanitation sciences are readilyavailablefor consider- In LewisCarroll’sclassicbook, Alice in target of the Millennium Development ation;b)specificfeaturesofthe situation at Wonderland[63], Alice comestoafork in Goals[59]. hand that bear on the discrimination among the roadwith twopaths leading in different Health informaticswould need to show theseoptions aretaken into account; c) ap- directions. Confronted by aCheshire cat she similar, or better benefits,inordertoget a propriateassociationsare made between the asks: “Whichpathshould Itake.”The re- fare share of limited budgets. specific featuresofthe situation andthe sponsefrom the Cheshire cat is:“Well, that manyoptions;and d) the right technology is dependsonwhere youwanttoend up?” deployedand localcapacity developed to Alice saidshe did not know. TheCheshire 9.2Translating Knowledge permit access to the information. cat responds:“If youdon’tknowwhere you into Policy and Action want to go, it doesn’t matterwhich path you take.” Thepaper lays heavyemphasisongreater 9.3Building on the Collective Without vision we areboth unclearabout levels of sophistication in research for Wisdom our direction andattimeshaveconflicting scientific discovery.However,one could directions. This makesitdifficult to formu- argue that the weakest link in the research Severalrecentmeetingshaveraised the late plans,objectives, goals, actions, and no continuum fromdiscovery to dissemination issueofaninternationalregistryfor in- waytomeasure results.Unlessweknow anddeployment, is perhapsinthe latter formatics research/trials –toprovide are- whereweneed to go,wecannot createthe phases of thischain. Therefore,there needs positoryofresearch information/experience path to the future to be abalance between efforts aimedatdis- andthe potential to build on successes while The Informaticsand Medicine:From covery andthosetargeted at the so called learning from the errors of one andall. MoleculestoPopulation article presents an “know-do gap” –the gulf between what is The paper’sbroadscope also covers the outstanding overviewofthe currentprog- knownand what is done in policyand prac- role thatinformatics can playinempower- ress in medicine,bioinformaticsand biol- tice. Again, interdisciplinarytraining, ing citizenstocontribute to their health. The ogyinformatics,biomedical engineering whichthe paperadvocates, would authors thusencourage one to hope that health informaticsand eHealth, andpublic strengthenresearch into “technology en- such thinkingalsooffersanopportunity to health, life sciences, publichealth, life

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sciences and publichealth informatics. This IMIA as an international association is pre- article will become an instant cornerstone paredtofacilitate or work with otherstoef- 11. Nanomedicineand classicarticle notonlyfor itsoverview, but fectivelyaddress. Thesix sectors are: RegenerativeMedicine Pose for its challenges anddirections. Congratu- 1) health improvement; lations to the multiple authors forcreating 2) research/science (including howwe NewChallengesfor this article thatisaworld-wide guide. understand andcreateevidencetosup- BiomedicalInformatics Ititledmycommentary “Envisioning the porthealth); Future–Informatics andCollaboration”. 3) the behavioralresponsibility (ethics) that (by Fernando Martin-Sanchez) Thephrase “envisioning the future”char- refers to ourethical andsocial responsi- acterizes the challengethatweface in bility; The reading and study of thepaper of Kuhn et achievingthe overallpicturepainted in the 4) education (including best practices in al.[1] has represented aparticularlymotivat- vision the Informatics and Medicine:From educating ourselvesand others); ing and scientificallyenrichingtask. After MoleculestoPopulation article creates. The 5) the multiple types of relationships (com- several years of workingonaspects related sub-title “Informatics andCollaboration” municationsand connectionstobuild with theanalysisand implementationofthe not onlysupports that informatics will be relationships among stakeholders); and synergybetween medical informaticsand “the most important driverand mediator for 6) the equityofIMIA, our obligation to bioinformatics,thisdocument represents the innovation”asstatedinthe article,but share, distribute anddisseminate. most complete updated review of theresearch stresses thatweneed collaboration to be challenges in each of the four areas that are successful. We stand at the crossroads of tomorrow, accepted as constituent of biomedical in- One organization that is preparedtosup- compelledtoaddress the challenges out- formatics (BMI). Furthermore, these fourdis- portcollaboration is the InternationalMedi- linedinthe article andimpact of our ciplines are not described independently,in- cal Informatics Association (IMIA). Three multiple efforts andthe visions theyenable. steadathorough analysis of their mutual re- of IMIA’s goals include: Inherent in IMIA’s role is to bring to- lations is provided. The analysis of the con- ● promote informatics in health careand gether, from aglobal perspective, scien- nectionsbetween BMIand biomedicalengi- research in health, bio andmedical in- tists,researchers, users, vendors, devel- neeringresults especiallyinterestingbecause formatics; opers, consultants andsuppliersinanen- this is atopicthat has givenrise to some con- ● advance and nurtureinternationalco- vironment of cooperation andsharing to troversialopinions in thepast. The authors operation; research and develop the concepts needed providehere aframework that canbevery ● further the dissemination andexchange to supportthe organizations of the world usefultofacilitate areciprocal collaboration of knowledge,information andtechnol- seeking technology as transformational. between experts in bothfieldsand to define ogy. Through its many publications(Methods of some commonground (such as imagepro- Information in Medicine, International cessingormodelingand simulationofbio- IMIA created astrategic plan(Towards Journal of Medical Information and Year- logicalentities andprocesses). IMIA 2015 [64-67]). Knowledge is the cen- book of Medical Informatics)and elec- It is also very valuablethe effortmadeby tralcore of IMIA’s strategies, interactions tronic communication mechanisms IMIA the authors to provide amodelfor interdisci- andefforts. Theplannextfocuses on can be amajor disseminator of the know- plinary education thatitisclearly oriented science, portraying IMIA members’con- ledgecreated.Asanorganization com- towards facilitating translational research.I nection andintegration with the science and mittedtopromoting best practiceinthe use fullyagree with their claimthatthe new discoveryofinformatics.The next connec- of information andcommunication tech- generation of scientists should have to be tion is the application of scientific dis- nologies withinbiomedical informatics exposed to (atleast)two of the core disci- coveries, including the multiple questions andinhealth andhealthcare, IMIA will en- plinesatearly stages of education.Fur- andissues thatare created anddisseminated sure thatituses and promotes best practice thermore, Ibelieve thatthe integrative in informatics. This is followedbyIMIA’s in its ownuse of technology as atrans- approach thathas inspired the authors to de- impact,referring to the potentialimpact that formationalstrategic asset. sign the newGraduate School will become a IMIA andits members can have on govern- We stand lookingatthe future portrayed referenceand will be followedbyotheraca- ments,nations, outcomes, health profes- by the Informaticsand Medicine article.We demiccenters. sionals, andall other stakeholders.The last have avision.Ifwework independentlyto- Indeed,there is no amajor criticismto major focus representsIMIA’sinteractions ward various isolatedgoals we will losethe the paperfrom my side,however,taking into with individuals, citizen organizations,per- opportunity to work togethertocreatethe account that severaloutstanding bioengi- sonalhealth involvement, dissemination synergyneeded for reaching the desired neershaveparticipatedinthe work leading andacceptance, enabling personal responsi- state. This is an excellent time forinter- to this paper, Ibelieve thatitwould have bility, andpublic/personalhealth. nationalcooperation. been importanttoraise the issueofnano- The seconddimension of IMIA’s Stra- technology andregenerativemedicine since tegic Plan representssix keysectors that theyposenew challenges for BMI. It is not

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my intent to consider theseissues in depth in likelytosee nanomedicine impacting on that is being generated at the nano leveland this briefcommentary.Rather, Iwill point areas such as biomedical research,preven- to integrate it with the biomedical (pheno- outsome considerations andlet the reader tion, diagnosis andtherapy [68]. typic,genotypicand environmental) data. become moreinformed andinterested about ● Prevention anddiagnosis –All the new Nanomedicine gathers anddealswith large thesetopics,particularlywith referenceto advances in nanotechnology areen- volumesofcomplex data, linked with ex- their complementarity with the paperau- couraging the scientific community,es- ternal sources andusually distributedin thors’ design of educational programs. pecially in biomedicine,touse the ‘na- heterogeneous locations. noscope’thatwill allowthemtosee a Nanoinformatics involves the research newscaleofgenomic, phenotypicand and development of effectivetools/technol- 11.1Nanomedicineand Regener- environmentaldatatointegratewith the ogiesfor collecting,standardizing, sharing, ativeMedicineRepresentNew information alreadyavailable. As an analyzing andvisualizing the vast amounts example, the next generation of DNA of data andinformation relevant to the Trends beyond GenomicMedicine sequencersmakes useofbeadsand nanoscalescience in severalareas such as other nanotechnologies.Nanosensors literature, physico-chemical properties, bio- Althoughthe paperonlymentionsnano- andnanodeviceswill permit to assess logicaland toxicologicalinteractionsand technology on one occasion in section 2, na- the different positive andnegativeenvi- clinical effects[70]. nomedicine andregenerativemedicine are ronmentalfactors that affect an individ- Several requirementsfor BMIcomefrom recognizedtobeamongthe most promising ual’srisktosufferfrom adisease. New theneed of improvedtoolsfor designing, trends in medicine for the future.Nano- in vitrodiagnostic testsand miniatur- modeling, and visualizingthe newnano- medicine is definedasthe useofnanoscale izedimagingsystems will provide more materials and scaffolds for tissue engineer- tools andcomponents for the diagnosis, pre- sensitive detection methods. ing.Also,new databaseswill have to be vention andtreatment of diseases andfor ● Therapy–New nanostructures will be designed to store physical, chemical andbio- understanding their pathophysiology(Euro- used as drugs.Novel methods of drug de- logicalproperties of nanotechnologydevel- pean Science Foundation, Nov. 2005). Re- livery systemsconsisting of anti-cancer opments. Semantic interoperability will generative medicine seeks to develop func- products bound to nanoparticlessuchas have to be granted notonlybetween nano tional cell, tissue, and organsubstitutes to buckyballs, nanocapsulesand den- resources, butalso between them and the repair,replace or enhancebiological func- drimers arealreadyareality.Imaging existingmedical terminology and coding tion thathas been lostdue to congenital ab- techniques will be used to monitor drug systems. Biomedicalinformatics can sup- normalities,injury, disease, or aging (NIH release or for patient’sfollow-up. Stem portregenerative medicinethrough theap- Definition, NIBIB, June 2004). cells mayprovide tissue for transplants in plicationoftoolsand informationsystemsto Interestingly, while genomic medicineis the context of degenerative diseases. Fi- characterize the molecules involved in dif- based on theuse of molecularinformationto nallyregenerativemedicine will allow ferentiationmechanisms, including growth designnew approaches to promote health, the manufacture of newartificialtissues factors, hormones,cytokines or integrins. and prevent,diagnose,cureand treat dis- or organs,orthe useofnanotubes and ACTION-Grid is anew research project ease,nanomedicine and regenerative medi- nanofibers to build scaffolds wherecells fundedbythe European Commission cinegobeyond that point,inthe sense that fromdifferent organs can grow. (2008-2009) on healthcareinformation sys- they can entail an interventiononthe bio- tems based on grid capabilitiesand nano/ logicalstructureofthe human being. It is my Nevertheless, some of the recentlydevel- bio/medical informatics. This project,co- belief that these twofieldspose newchal- opednanoparticlesmay have negative side ordinated by Prof. Maojofrom the Univer- lenges forinformatics beyond those ad- effects. Forinstance, an article in Nature sidadPolitécnica de Madrid andour own dressedunder therealm of genomic medi- Nanotechnology hasrecentlyreported that group hasasits main objectives to analyze cine. some formsofcarbon nanotubes could be as synergiesbetween biomedical informatics harmful if inhaledinsufficientquantities andnanoinformatics andtocombine these [69]. This fact justifiesthe need of careful results with data fromaninventoryofgrid/ 11.2Impacts of these NewTrends data handling in clinical trials in this area. nano/bio/medical methods andservicesde- that CanBeEnvisionedinEvery veloped by the consortium [71]. FacetofHealthcare 11.3Nanoinformatics Could RepresentaNew Subdiscipline 11.4InConclusion Nowadays the number of clinical appli- cationsofnanotechnology is increasing within Biomedical Informatics Nanomedicineand regenerative medicine with research at the nanoscale providing im- open newavenuesfor research in biomedi- portant information prior to clinical appli- Nanotechnologyrequires the contribution cal informaticsmethods andtools. Just as cation.Justasmentioned above, we are of informatics to process allthe knowledge the advances in “-omics” research brought

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about the connection of medical informatics with the moleculardomain, is BMIready nowfor addressing the nano world andex- panding itsscope down to the atomiclevel as showninFigure 2? None of my viewsexpressedinthiscom- mentaryshouldbeinterpreted as acritic to the paperbyKuhn et al.Onthe contrary, an edu- cational program such as the onedescribed in the paper by our colleagues fromMunich, that is based on interdisciplinarity andwith aclear translational vocation, is placed in the best position to face the newchallenges related to information processing in medicine, whether theycomefromthe side of nanotechnologyor fromany other newdevelopment that may arise in the future. In this regard,anew generation of scien- tists knowledgeable about nanotechnology Fig.2 Information andmedicine: from atomtopopulation will be essentialtomanagethis newinfor- mation andefficientlyintegrateitwith bio- 12.1Bio-silico Interfacing medical informaticsare strong enough and medical data from the atomictothe popu- the integrativeview, whichhas been re- lational leveltotranslate allthese findings Iwould startmycomments by noting the peatedly mentionedbythe authors,would intobetterhealthcare. original approach in the secondchapter become even moreconsistent by including “The OverallPicture: WhereDoWeStand these items too. andWhere Do We Go”, with adetailedlist of technicaltrends in computerscience and 12. TheNeed to Create adjacentdomains whichwill bring asignifi- 12.3Simulations in System the Framefor Interdisciplinary cantimpact biomedical informatics. We can Biologyand Virtual addherethe interdisciplinaryresearch (bio- Collaboration(by George physicsand computerscience) on the direct Physiological Human Mihalas) information transferbetween biological system andcomputers[73]. Thepotential Anotherwelcomedfeature in the article is applicationsare tremendousand still seem the specific referenceand the detailed Biomedicalinformaticsistodayafield closeto“science-fiction”. presentation of “Informatics for Biomedi- with one of thehighestrates of devel- cal Engineering”,atopic often left on a opment.New techniques or devices, new secondplace or treated superficially. The approach or methods, newapplications or 12.2Neuroinformatics research challenges cover, indeed,several solutions are reportedevery day[1].Such directions, requiring various tools.And an avalancheofnewsneeds asystematic During the ninetiesmostprospectiveviews when we talk about newinformatics tools work forclassifyingand stratifyingall ac- aboutmedical informaticsresearch used to in cellbiology we mustmention the work cumulated dataand knowledge. The most consider bioinformatics andneuroin- of MasaruTomita andhis co-workers[76] natural approach in classificationwould formatics as mostpromising [74]. The on the “virtualcell” –apackagefor com- startfromthe structural levelofthe studied previsions on bioinformatics turnedout to putersimulation of cellularprocesses, system[72].And this approach has been be true.However,the chapters on neuroin- dedicated softwaredevelopedfor thispur- adopted also by Kuhn and hiscollaborators formaticsare nowrarelypresent.The reason pose[77]. We can expect thatspecialized [1]who emphasized this view even in the mightbethatthe impact of neuroin- softwareorevennew theoretical models title:“From Molecules to Population”. formatics research would rather be on cog- will be developed for each level. On the Theirexcellent paperisfully comprehen- nitivesciences thanonmedical sciences. next structurallevel we have to mention sive by countingall topics of research, Andthe samemightbetrueabout “affective the PhysiomeProject,initiatedbyPeter brings somerefinement in descriptionand computing”[75]. However, applicationsin Hunter [78], followedbythe Euro- updates theactual trends. It is worthto neurosciences andpsychology,with their physiome Project, andcontinuedbythe make here someshortcommentsconcern- “medical”shadows –neurology andpsy- VirtualPhysiologicalHuman Projectofthe ingthe research challenges on each level. chiatry –,show thatthe connectionstobio- European Commission [79].

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12.4Integration and the Role both the descriptive insights providedfrom as part of the keyresearch challenges, at this analysis, andthe specific educational least as apartofany interdisciplinary re- of Professional Organizations structuralrecommendationsimpliedby search program thatincludes as one of its these insights,tobequiteinvigorating,and components the area of medical infor- Various aspectsofintegration have been potentiallyhighly beneficial.Inparticular, matics: Iwould like listthreesuchchal- discussed in the paperand there arealsosev- the authors emphasize thatonlythrough lenges, althoughtheyare somewhat linked. eral other studies dedicated to integration expertsinone discipline whoprofoundly 1) Thefirstgrand challengefor amulti- (refs.9,10, 12, 17, 37, 39 of [1]). Theem- understand the conceptualworldofanother disciplinarycollaboration is the creation of phasisonintegration is understandable:the discipline can true multidisciplinary re- auniversal,formal, computationally acces- propertiesofalevelare different from a search develop.This emphasisisveryim- siblemedical knowledge base. Much of the simple sumofthe propertiesoflower com- portant, andiscertainlyevident to multidis- collaboration among areas such as clinical ponent levels!Some recentevents organ- ciplinary researchers, butunfortunately is medicine,clinical research,publichealth, izedbythe European Federation for Medi- notasobvioustodecision makersinedu- andmedical informatics, can and should be cal Informatics EFMIhad topicsdedicated cation as one would like it to be.One often distilled into aset of formal representations to integration of biomedical information encounters the viewthat, for example, hav- of declarativeand proceduralknowledge [80, 81]. ing awelltrainedcomputer scientistorin- that would be storedinauniversally acces- Actuallythe integrative view supposes a formaticianwork with biologists or clini- sible(to humans andmachines) knowledge quitecomplex approach and here it is the ori- ciansissufficientfor bringing about new base. That is,insightsregarding meaningful gin of the need to create the frame for inter- breakthroughsinbioinformaticsormedical [declarative] patterns of both individual disciplinarycollaborationand providean informatics; similarviews are oftenheldin (clinical) or population (epidemiological) education which crosses theboundaries –as the case of other disciplines.But, as the au- data, and, mostimportantly, the best state- so well is presented in thepaper in chapter 4. thors point out, the various sub-culturesof of-the-art [procedural] methods,protocols, Ifully share the viewofthe authorsand do the disciplinesstudiedbyKuhn et al.have guidelines, and care plans,todeal with such consider that biomedicaland health in- been highlyresilient to change or to inte- patterns,can andshould be organized, formatics professional organizations, like gration.Onlybywhatthe authors term specified, stored, andmaintainedwithin a EFMI or IMIA (International MedicalIn- “boundary breaking agents”, i.e., personal universally accessibledigitallibrary, using a formatics Association)shouldget involved examples of multidisciplinaryresearchers machine-comprehensibleformat (including in creatingthe appropriate collaborative thatthe students meetduring their training, the useofaset of ontological andtermino- frame andcontributetoeducational pro- can true interdisciplinary understanding logical standards) that supports mainten- grams, following thegood example of the andresearch exist. ance, use, reuse, andsharing of the knowl- 10×10program of theAmerican Medical In- Aparticularlygood example out of the edge. formaticsAssociationAMIA (ref. 18 of [1]). severalpotential interdisciplinarycollab- Icallsuchacontinuously changing li- orations suggested by the authors,is, in my brary of declarativeand proceduralclinical opinion, the need to strengthenthe links knowledge “the HumanClinome Project”, among bioengineering andmedical infor- in homage to the HumanGenome project – 13. TheNeed for aHuman matics. Aspecificexample, not explicitly or perhaps it should be termed the Human ClinomeProject discussed by the authors butprobablyon Cli-Knowme project,sinceitwould en- their mind,isthe possibilityofdeveloping a compass allcurrentlyknown declarative (by Yuval Shahar) “smartmedical home”,which monitorsits andproceduralhuman knowledge that can residents, alerts themorspecificcare be represented within andaccessed by com- The“MoleculestoPopulations” paperby centers when unusualpatternsare detected putational means. Kuhn et al.isahighly commendable effort (e.g., an elderlypersonfalls,orseemsto Aparticularsection of the Human Cli- at athrough, in-depth analysis of the need have aheartattack). Developing such a nome project thatIhaveinmind as agood for multidisciplinary collaboration in the smarthome requires understanding of both specific starting point is aworldwide ma- 21st centurybetween informatics, as an area the multiple sophisticated (and possibly chine-comprehensible digitallibraryofpro- of scientific endeavor,and severalspecific quitenew)sensors involved,aswellas ceduralknowledge,namely, clinical guide- subareas of medicine andbiology,asother development of intelligent computational linesand their somewhat morerigorous ver- such areas. Iwould like to comment on methods foranalyzing the huge volumesof sion, clinical protocols. These guidelines some of its keystrengths as well as on sev- data emerging from thesesensors,and for have been showntobehighly beneficial eral importantkey challenges to be faced continuously integrating these data with with respect to both improving the quality of thatshould be addedtoits research chal- up-to-date clinical andepidemiological care[82] andreducing itscost; it is also lenges list. knowledge. clear thattobeeffective, the guidelinesmust First, regarding the keystrengths and Second,regarding severalofthe areas I be integratedwithin the clinician’swork- main significanceofthe paper: Ihad found would like to see morestrongly emphasized flow [83]. Free-text andevensomewhat

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structuredguideline libraries existand are data, so as to suggest newwaysfor disease threatening in an immediate fashion,enable accessiblethrough the World-Wide Web. subtyping [86]. However, adding the tem- acertain amount of deliberation on the side However, to be trulyeffective, guidelines poraldimension as well as the effect of of the patientand careprovider, andmight must be continuously updated anduniver- using existing medical ontologiesand be potentiallyaffected by patientprefer- sally accessibleinamachine-comprehen- knowledge bases to betterinterpretthe data ences. Such an endeavor is not onlyuseful; sibleway,sothattheycan be automatically would shift the emphasistowards amassive, it is ethicallyimperative,evenifsome of the applied to the relevant patient(or patient largescale, continuous clinical trialthat patients mightelect to notuse it, delegating population).One such attempt at adigital uses andreuses the world'sincreasingly the responsibility of deciding on the best guideline architecture is the DeGeLproject voluminouselectronic medical record data courseofaction to their careprovider[87]. [84], whichincludes acomprehensive base. Needless to say, ontological andter- Again, effectivesolution of such achal- methodology forspecification,mainte- minological standards areanabsolutepre- lenging problem requires andfosters the nance, search,retrieval, andapplication of requisite in the case of accessing clinical collaboration anddeep mutual understand- clinical guidelines,using ahybridmethod- data as theyare in the case of accessing ing of careproviders,decision analysts, ology that supportseveral intermediate medical knowledge. game theorists,behavioral scientists,econo- formatsonthe wayfrom afree-text-based Such an analysis would better identify mists, computational scientists,and other representation to acompletelyformal, exe- meaningful[temporal] patternsand associ- medical,engineering, andcomputational cutableformat.Thecollaborative methodol- ationswithin andamongfeaturesofdis- disciplines.Typicalchallenging research ogyfor guideline specification wasrecently eases such as diabetes,hypertension, cer- tasksinclude finding anddeveloping in- evaluated in amultinational collaboration ebralstroke,AIDS, etc. Thegoalwould be creasinglyeffectivewaystoelicit patient andfound to be feasible[85]. Of course, to discover the “natural” course of such preferences [88], andefficientlyintegrating manysub-partsofsuchanarchitecture diseases, to identifymeaningfultemporal such preferences within the overallclinical requirefurther research and enhancement; clusters andpatient types, to detect patterns andpublichealth careworkflow [89]. multiple researchers throughoutthe medi- predictive of certain intermediate andfinal In summary,Iwelcome the discussion cal informaticscommunityare working on outcomes, to improvebest practiceguide- startedbyKuhn et al.and itsstimulating various aspectsofthis challenging problem, lines(i.e., affect also the proceduralaspect educational implications, while suggesting such as howtoexpressively represent the of the HumanClinome library), andtoen- aparticularset of challenges thatwemight guidelines, or howtoautomatically verify hanceour epidemiological knowledge and focuson, especially in the area of enhancing andvalidate the knowledgeexpressed with- preventive careunderstanding. our understanding of individual andpopu- in them. Such achallenge requires andfosters lation-based patientcare. Such agrand challengewould bring to- closecollaboration among clinicians,epi- gether manyofthe disciplines mentioned by demiologists, informaticians,mathema- the authors of Kuhn et al.’spaper,and en- ticians, computerscientists,biomedical en- forcetruecollaboration to be successful. gineers (consider the effect of a“smart 14. CollaborationofSpecialists 2) Much of the declarativebiomedical medical home” technology on the sourceof Is more Practicalthan to Find knowledge necessaryfor better manage- data availablefor such aproject), biologists, ment of patients,inparticular, chronic pa- andotherdisciplines. aGenius(by Katsuhiko tients (the careofwhich is responsible for 3) One aspect Iwould like to see better Takabayashi) about 80% of the health carecosts in devel- represented in the context of both individual oped countries), such as mightbepartofthe andpublichealth care(anditcould be even- HumanClinome project,should be acquired tuallypartofthe universal procedural Current medical andhealth caredomains from analysis of massive amounts of data of knowledge base) is an emphasisonmedical can be divided intoseveral fields from mo- patients monitored longitudinally for sig- decision supportthatconsiders individual, lecular medicine to publichealth andineach nificant amounts of time (i.e., often,many customizable,patient preferences as an in- fieldinformatics plays asignificantrole. years),tomine meaningfulpatternsfrom herent part of each decision that might in- Kuhn et al.describedpreciselyeach rela- the data,using pre-existing clinical knowl- clude an option for deliberative thinking. tionship andexplainedthe importanceofin- edge.Inotherwords, we need to continu- Examplesinclude geneticconsultation terdisciplinarycollaboration andeducation ously performmassive,distributed, intelli- (e.g., the value of early knowledge of poten- in their review. Kuhn realized the substantial gent temporaldatamining. Indeed,ithas tial seriousdisabilitiesofthe baby,versus change from hospital information systems been recentlysuggested,althoughwithout the riskofspontaneous abortion of ahealthy to electric health records (EHRs)inthe early muchemphasisonthe temporalaspect, that baby), therapy of hypercholesterolemia, days with distinguishedability[90]. Here he “clinarrays” (influenced by microarrays) hypertension, anddepression, oncological classified informaticsinto four areas for might be constructed from analyzing large care(e.g., weighing the benefits andcosts of corresponding medicine andhealth care; amounts of population-based laboratory surgery, chemotherapy,and irradiation),and bioinformatics andsystems biology, in- data,possiblycorrelating it with biological manyothersituationsthatare not life- formaticsfor biomedical engineering,

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health informaticsand eHealth, andpublic information. However, when some com- portantand efficientwheninformatics can health informaticsinorderfrom the point of mon partscan be utilized as EHR in broad provide enough huge data to be analyzed. micro to the mass world. In fact it is in- terms, it will be reutilized in many other Public health informaticsseemstohave credible to do without informaticsinall ways apartfrom personaluse. To achieve moreweight than anyinformatics in other fields nowadays andhealsoprovidedtheir it, preparing the rulesand guidelines such fields of medicine or health care, because perspectives respectively. as access control[97] andprotection sys- the results of analysis of information in this As forbioinformatics andsystemsbiol- tems of privacyaswellasmanysophis- fielddirectly affectscritical politics such as ogy, there are large amountsofdata in omic ticated systemsincompliancewith regula- global warming,biofuels,orglobal food (genomics, transcriptomics, proteomics and toryrequirements arecrucial.Additionally shortage,which relatestothe fate of hu- phenomics) world [91, 92].Because genomic even afterde-identification,proprietary of manity.Sincepublichealth informatics and proteomic data will explode to astro- the data to useisnot clearly definedinlaw, should include allinformation comprehen- nomical numbersofinformationinthe very thoughitisveryimportantinthe near fu- sively with absolute accuracy,itisexpensive nearfuture, researchers cannot work without ture for transversestudy. If someonewould to createand maintain vital information. informatics to handlethesedata and to know not acceptone’s data to be used for such a Even though, we cannot completely entrust their relations. SinceevenSNPs which just study,itwill make some biasinresults. industrieswith these works,because the expresspoint mutations exist in one million Therefore alldatashould be enrolledfor results mightbecrucial in deciding our per person, or there are 22,000 genesand special studies,which is controversial in destiny. more than 100,000 proteomes,itisquite easy regard to individualrights. Finally, in allinformatics fields,data to imaginenumerous combinations existing As Kuhn emphasized,digitaldatahave value increases when integrated underthe between them to be explored. Thus sophis- become acore elementofresearch,knowl- guarantee of their credibility in quality and ticated anduseful information technology edge generation andknowledge manage- theyare nowshowing their whole appear- and powerfulsoftware will contributetoa ment. EMRsand EHRs areultimate targets ance as the name of truth in front of us by in- great progress in molecular medicine. Es- for automatedresearch liketextmining tegrating.However theymightbesohuge peciallydata mining techniques [93] will be [98].Wewould find drug interactionsor like an ocean or abig forest.Unlesswehave very usefultoolsfor translational research to potential effectsand side effectsquite strong tools to discovertheir relations and connectomic dataand clinical phenomenon easily from medical records with them. offerthembefore us,wecannot saythatwe or contributiontodiagnosisand selectionof Sometimesweneed the tools to transform can really see them, thoughitmightbea treatmentwith omics data. Thereforewe original data intootherexpressions in vicious cyclebetween the data anddata must providesuitable environmentstouse ordertouse themmore easily.For miningtools. them [94]. As it will bringreasonable profits example, time-orientedclinical data such Kuhn mentionedhow vital it is for gen- in this field,manyindustries will emerge to as laboratoryfindingsorprescriptions will erations of scientistswho can combine dealwith them as venturecompanies as in be perhaps transformed intootherex- knowledge andskills from bothmedicine Siliconvalley. pressions for easy manipulation andaccu- andinformaticsand emphasized the im- Healthcareinformation is also afield rate enhancementofclinical assessment portance of theinterdisciplinaryedu- forblue chip industries, because eHealth such as temporalabstraction [99].There cation in earlyphases as well as interdis- providesalarge portion of healthcareex- areonlyfew practical tools at the moment ciplinarycollaboration. He started to penditure [95] in thisdecadeasKuhn men- butwewill obtain universal tools aftertrial strengthenthe collaborationand struc- tioned. Electronic medical records anderror in the future.Moreover,for these tured interdisciplinaryeducation in en- (EMRs) will certainlyadvance in the near trials,wealsoneed longdatastorage compassing medicine, informatics, bioin- future,and EHRs holdmanydreamsasin- beyond facilities. With themwecan com- formatics, biologyand system biology, tegration of notonlyEMR butalsowith plete one’swhole life data for PHR and engineering,healthinformaticsand pub- many other health areas or even other in- also to compare with or integratewith lic healthinMunich.IneasternAsian formation not relatedtohealth. Some gov- omic (genome or proteome)data, which countries like Japan,different environ- ernments consider an electronic post will be averystrong methodfor trans- ments from thoseofthe European coun- office boxoranATM cardsystem for the lational studies.Inthese days retrospective tries,mostresearches in clinical medicine integration of pensions,EMR of several studies arenot well estimatedinmedical have been proceeding in the departments hospitals, health checkup data, health in- journals. Howeverwhenweexpect the ef- of medicalinformaticsatnationaluniver- suranceand so on. This personal health fectsoroutcome of some treatment over sity hospitals.Theyconsistofmedical records (PHR) concept [96] is also opento the longtermsuchasten yearsormore,we doctors andspecialists of informaticsor industriesaswell, andall data of oneindi- have to wait forthe results many years, and computer sciences andthere were fewde- vidual about not onlyPHR butalsovarious expected results would not be obtainedbe- partments for bioinformaticsinother fac- information would be stored. Of course cause of changesoftreatment or other cir- ulties.Thismight meanthattheyare still data of PHR mustbestrictlylimitedtoper- cumstances in thatperiod.From this point in thecourse of westerncountries in the sonaluse because it includes confidential of view, the retrospective study is very im- olddayswhere bioinformaticswas not in-

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dependent of medicalschool,oritmight maintenancecosts over time exceed initial be as aresult of differenthistorical per- 15. Strategic Thinking Is development costs, andaftersome further spectives. At anyrate theycan work Needed,Cost when the time, exceed the benefits thatsoftware pro- together without anyrestraint in the hos- vides. This fact is the major reasonfor clos- pital at themoment. Some engineering Research Results AreTrans- ing down apparentlysuccessful medical in- studentswork together with medicaldoc- ferred to Practice Is an Issue formaticsprojects, often surprising and tors in our departmentatthe hospital. In frustrating the participants.Unfortunately, otherfieldsofmedicine such as molecu- to Be Addressed we do not teach our SWE students howto lar medicine, however, specialists for (byGio Wiederhold) plan for thesecosts, nor do we teach them informaticscomefrom school of engi- howtoassess the potentialeconomicbene- neering or physics.Insummary, in east- fits of the software[105]. ernAsia, thereisnostrict boundary Thearticle by Kuhn et al.[1] is impressive Replicating successful localsystems has betweenspecialties originated from in its comprehensiveness. It also is frighten- been difficult in the past and remains hard. Meister system and they seem to have less ing.The number of problems that requirere- Earlysystems were tied to obsolescing tech- difficulty to collaborate in clinicalmedi- search,the multi-disciplinary cooperations nology,but morerecentsystems,asseen at cine. Neverthelessitisnot idealbecause needed to be successful in the interaction of Vanderbilt andthe Palo Alto Medical Foun- this is not intendedsystematizedinterdis- informaticsand medicine, the difficultiesof dation have not spawnedsuccessors either ciplinarycollaboration. demonstrating effectiveness, andthe bar- [106]. There is moreinvolved thantechnol- Even in medicine or in informatics, riers to beneficial implementationsare ogy, leadership is certainlyone issue. there arenospecialists in allfields,and showntobemassive.Whilethere mayin- Thehardissues of economics arecitedin therefore we need teamwork collaboration deed be an urgent need to transferresearch the beginningand the endofthe paper, but between medical doctorsand specialists results to practice, strategic thinking is do not pervadethe discussions.The growth forthe informatics fieldand others in vari- needed as well, as hasbeen shownin of IT spending at 12% year is takenasindi- ous fields if necessary. Thereare afew simplersettings[100]. Costisone issue to cation of importance, butisalsoarate which people whoare familiarwith both fields be addressed. We expected in the past ratios is unsustainableinrelation to national because of graduation from both medical of research projectsefforts to practical im- expenses in anycountry, especially as the school andfaculty of engineering or plementation to integration into practiceof supportbase of working taxableindividuals physics.However theyare rare cases and 1:7:25[101], andlittle hasbeen changedto decreases [1, Sec. 2and Sec. 3.4.1]. At the even if oneknows well in both fields,he improvethis ratio. Medical informaticswill sametime the industrialtax base is di- cannot surpass twospecialists whocollab- have to depend on progress in softwareen- minishing, as companiesfind ways to move orate well unless he is areal genius. There gineering to createusable software. We ex- their intellectualpropertyand the profitsde- is aproverb in Japan thatgod givesusonly pect thatnew initiativescited, as service- rivedfrom thatIPtotax havens with no or one talent. According to this proverb and orientedarchitectures, will improvesoft- smallhealth carecosts [107]. Giventhe high takinginto account of the very small ware development, butanearly reliance on a cost of implementation, it is important to numbers of geniusesinthe world,good and technology that is not yetmature is current- focus on large andcostlypopulations where successful collaboration of specialists of ly frustrating efforts at the US Veterans actualcostreductions arepossible, an issue different disciplineswill be morepractical Health Administration systemstoupdate not always coveredbycost-effectiveness thantofind agenius.One of the purposes their medical record system (VistA)[102]. arguments.Some disease-based categories of multidisciplinaryeducation is under- It is purely acoincidence, butalsoanillus- arewellrecognizednow,asdiabetes. How- standing one’scolleagues’ work as well as tration,thatotherVistasare encountering ever mostdiabeticspresent multiple prob- knowing the position of one’s specialty development andacceptanceproblems as lems,are seen in diversesettings, and their comprehensively in the beginningofone’s well [103]. Medical informaticscannot sup- records at each site tend to be incomplete. education.Itisalsoimportanttolearn plant computersoftware engineering Forinformation integration there is abene- about laws andethicsinthe fields as gen- (SWE)efforts butmusttakecareinunder- fitinthatmembers of that patientgroup eral matters in this education.Thus Ibe- standing when andwhattoexploitaspartof tend to travelless, so thatlocal andregional lieve mostimportantlythatakeytosuccess biomedical engineering (BME). integration can proceed before nationaland to collaborate in information andmedicine Thetotal cost of software-based sol- global record integration is achieved, and is mutual respectability andgenerosityto utions in anysetting hastobebudgeted economicbenefits can be realized as well as their colleaguesindifferent discipline. properly. Computer science education improved care[108]. Thesamepattern This spirit will be cultivatedinearly inter- servesuspoorlythere.Software mainten- holds for manyofthe elderlypopulation, disciplinaryeducation thatKuhn pro- ance costsrun at about 15% of prior soft- whorequireasubstantial fraction of our posed. ware investment costsand aredue primarily health careservices. Cost-effectiveness is to keep the softwareup-to-date as the exter- stressed in the paper, buttransfertopractice nalworldchangesaround us [104]. These requiresacost-benefitaswell.Thatbenefits

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arehardtodemonstrateisrecognizedinthe thatthe living world presents. Scientists could be fully captured,doesnot fully deter- paper, butmustbesought. have at timesdisparagedscientific ap- mine whoweare.For instance, what our Moving to the oppositedirection,per- proaches used by others as being either brains do with allthe inputsisyet quiteun- sonalized diagnoses andtherapies,isanex- naïveorimprecise. Engendering sympathy known, andrandomnessremains [111]. Re- tremelyattractivegoal. But givenfinancial to the problems thatboth communitiesface search is requiredtoopenuppossibilities. constraints, systemstobring research re- in their research is aprerequisite to achieve On the horizonare systemsthathelpthe sults will require very careful strategies. cooperation at the individual level, creating clinicians andthe patients to interact effec- Howdoesone conductclinical trials to de- amodelthatcan thenmoveupthe organi- tively,towhich research into the issues termine efficacyofpersonalized careproto- zational ladders. My personalsense is that listedinthis paperwill contribute. cols?Presenting findings to clinicians will directives imposed from above, mandating require innovation.Phrasing findings in cooperation, do not createeffectivelong- terms of statistical evidencebased on simi- termcollaborations. References larpopulations, as done nowfor medical One barrier, recognizedinthe paper, to 1. 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Muhammad AliDhansay, MD Prof.Nancy M. Lorenzi, PhD Prof.Yuval Shahar, MD,PhD Vice-President for Research Past-President,International MedicalInformatics Association Ben Gurion University South African MedicalResearchCouncil (IMIA) Department of Information Systems Engineering Tygerberg, Cape Town Vanderbilt University Head,Medical Informatics ResearchCenter South Africa Medical Center Beer Sheva E-mail: [email protected] The Informatics Center Israel Nashville, Tennessee E-mail: [email protected] Prof.Antoine Geissbuhler, MD USA Geneva University and University Hospitals E-mail: [email protected] Prof.Katsuhiko Takabayashi, MD Chair, Department of Radiologyand MedicalInformatics Chiba-University Geneva FernandoJ.Martin-Sanchez,PhD School of Medicine Switzerland Ministry of Science and Innovation Director, Division of Medical Informatics and Management E-mail: [email protected] Institute of Health “Carlos III” Chiba Head,Medical Bioinformatics Department Japan Prof.WilliamHersh, MD Madrid E-mail: [email protected],[email protected] Oregon Healthand Science University Spain School of Medicine E-mail: [email protected] Prof.Gio Wiederhold,PhD Professorand Chair, Department of Medical Informatics and Stanford University ClinicalEpidemiology Prof.GeorgeMihalas, PhD ProfessorEmeritus, Depts. of ComputerScience, Portland,OR Past President,European Federation forMedical Informatics Electrical Engineeringand Medicine USA (EFMI) Stanford, CA E-mail: [email protected] VictorBabesUniversity of Medicine and Pharmacy USA Chair, Department of Medical Informatics E-mail: [email protected] S. Yunkap Kwankam, PhD Timisoara World Health Organization Romania CoordinatoreHealth E-mail: [email protected] Department of Health Statistics and Informatics Geneva Switzerland Professorand Director Emeritus University of YaoundeI Centerfor Health Technology Yaounde Cameroon E-mail: [email protected]

MethodsInf Med4/2008